Depakote and keppra
Posted , 6 users are following.
hi all my name is Allen and I was wondering if anyone would know the answer to this question?!
9/9/2015 I had a subdural hematoma resulting in an epilepsy diagnosis.
im 57 years old and they put me on depakote for three weeks that helped but didn't stop the seizures completely so he's switching me to keppra and am in the process of doing that today is day 8 at 500 milligrams and at two weeks I'll be taking 1000 a day.
he tells me that if this isn't successful it could be stress related.
im still having 4 to 7 seizures a day and am hoping the keppra will do the trick.
my question is does anyone know of another med I that works with keppra that I could bring into the conversation if need be?
thank you 
1 like, 105 replies
mo-jas allen07303
Posted
sorry to hear you find yourself in the "seizure club". i'm not familiar with depakote (i'm in uk and perhaps you're not, so have different options).
ten years ago they started me on tegretol retard. after a year or two they added keppra; at its highest i was taking 2 grams of it per day on top of the tegretol.
having finally weaned me off the hideous tegretol i'm now on a combination of keppra and lamotrigine (also known as lamictal).
i found tegretol to be utterly overwhelming on every level - at one point i couldn't even write my name; whilst not without issues the keppra is noticeably easier and i think the lamictal is probably the easiest of the lot to tolerate.
while your doctor may be right about stress connections, sadly i think many of us canl tell you that the meds simply don't work for everybody, let alone within weeks.. it's taken me a long time to reach even being moderated somewhat by the pills but i can say that keppra and lamictal in combination have given me the nearest thing to a dent in my seizures i've yet seen!
i would suggest not trying to pin it down too much ..it may even take years to get it under control but the upside is that sooner of later they usually do. press your doctor on the alternatives.
i do hope you have plenty of support around you as you increase the dose, allen. that in itself can be debilitating for a while. good luck. :o)
karen26258 allen07303
Posted
Littlelizzie197 allen07303
Posted
Really hope you get sorted super quick xxx
Winnie143 allen07303
Posted
I am on the old fashioned drug phenobarbitone and I had an SAH (Bleed on Brain)
Saying this I have had epilepsy since 14/15 puberty now 60 mumble lol. nearer to 70 now!! Been on phenobarb since 14/15 and gradually they have upped them over my life, so after SAH they lowered my phenobarbitone drastically and put me on Keppra which does stop the shakes/jerks but still had seizures. I asked if I could go back on my phenobarbitone which they said okay but they upped them and the Keppra although kinder to system made me fall asleep !! We know our own bodies so it is trial and error, so never be afraid to tell doc you don't like this n that drug after all it is us that deals with the consequence xx Good luck
Winnie143 allen07303
Posted
Good luck
Win x
SteV3 allen07303
Posted
I am assume you have been diagnosed by a Neurologist that you are suffering from Epilepsy, and not just by a General Practitioner? With Epilepsy I am also assuming you have had a electroencephalogram (EEG) done for electrical activity in the brain?
If this is correct, then the output must of been electrical activity to diagnose Epilepsy. The reason I ask is many people these days are mis-diagnosed as being Epileptic, and are given the incorrect treatment to stop or lower the control of such instances.
I have had Epilepsy for nearly 30 years, and I am on Sodium Valproate 2,000mg a day (the highest of this medication is 2,500mg), usually no one is put on dosages higher than this because it can have an adverse effect. I am other medications, but most of them are for other disorders. I also used to have Rectal Diazepam, this is only to be used to bring a person out of a seizure, but these days this drug is carried by Paramedics, due to the amount of cases of people being admitted to A&E with rectal damage!! It is not one of the easiest drugs to administer, and these days it has been changed to Bucculam, a drug than is applied orally to the gums. Basically, to avoid calling Paramedics - when they can be avoided.
You may of thought I asked some strange questions initially of my post, this is because many people associate all seizures with Epilepsy, in fact many these days are not Epileptic at all, hence the wrong medication is prescribed and does not affect the seizures you have at all.
Now, I said I have had Epilepsy for nearly 30 years, however last year I was re-diagnosed, some seizures are Epileptic while the others did not produce electrical activity, but to anyone looking over you - it looks like an Epileptic Seizure, but if no electrical activity is going on in the brain then it is not an Epileptic Seizure. The difference is the body spasms like any normal seizure, you can also hear people around you, perhaps calling your name or asking you to squeeze their fingers - the problem is you lose all forms of communication, hence why to a Paramedic, they will think you are in an Epileptic Seizure. Believe me it is an horrible experience, you know people are around you, but you cannot respond to anything they ask, even when you eventually start to come out of it you vaguely remember anything about what has happened.
What makes this worse is, unless you are having an EEG at the time a Neurologist or Doctor will not know if it is an Epileptic Seizure or a Functional Episode.
Functional Episodes have 28 variations, but most of them have Epileptic looks, as in uncontrollable body spasms. Mine was only discovered by accident last year after seeing my Neurologist for BoTox Injections, I felt a bit light-headed and I do not remember anything after that, when I come around I had probes all connected to my head, they were doing an EEG, but it showed no abnormal brain electrical activity, hence the reason why it was not an Epileptic Seizure but a Functional Episode.
There is a Neurologist that specializes in these types of seizures called Dr, Jon Stone and deals with Neurosymptoms - entering his name and followed by neurosymptoms in Google will bring up his website which you will find much more in depth information, than I have gone into.
Remember, a few things though - many medications can take anywhere from 2-4 weeks to get in to system, to work correctly. There are many other medications for treating Epilepsy, but because we are all different it takes time to find the correct dosages and medications.
My last Epileptic Seizure was less than two weeks ago, but having 5 a day must take your energy away - I know I feel terrible for days after just one, but I get used to them, apart from pains from bruises or cuts where I have fallen. My wife is my carer, she does a wonderful job - we have three grown up children and been married 25 years!! We have good and bad times, but we manage, it is a case of having to these days.
If you need further help or details let me know.
Regards,
Les.
mo-jas allen07303
Posted
although my seizures started back in '88 after a blunt head trauma (geting run off my bicycle by a drunk driver) i only started meds 10 years ago. at times i have found the meds far worse than the seizures but it comes back to finding the right balance and mix for you.. i think what the posts are showing is that we can all react so differently to any particular drug - winnie found keppra ok(ish?).. whereas it turned my life to rubble till i was completely off it.
thankfully i've never come across les63's version of diazepam - lying in the gutter is bad enough - just glad i never came round in the street to find my trousers down and a bunch of paramedics working back there! i dread to think what my reaction would be! ..lol
again, all the best allen - and try to keep good humour, even when it seems they're stumbling in the dark.
SteV3 mo-jas
Posted
Diazepam these days is not normally given in the street, that would be embrassing to the patient. It used to be given to carers to administer to patients, normally indoors not outdoors. Of course this could be problematic to the patient and difficult for the carer. Also, doctors could administer Diazepam via injection, this is also difficult to administer.
It came to a time where Doctor's would nolonger give Diazepam to administer via Rectal tubes, the reason for this was due to patients that had been in seizures and had the Diazepam administered by carers had caused more damage to the rectum, as you can imagine this could be very painful if not correctly inserted properly and the Diazepam. Paramedics are still allowed to administer this drug today if the patient has not come out of a seizure within a certain time limit, however this is either given indoors or in the Ambulance.
The lastest medication Bucculam is administered orally, for faster reacting than rectal Diazepam. Bucculam comes in a syringe which is inside a tube with a secuity sticker on, which must remain sealed unless the syringe is used. Puting a pea sized amount on the gums, is much easier to do than rectal administration, and it is also the quickest way to calm the seizure down, paramedics do take other precautions should anything go wrong on the way to hospital, as in pulling over to administer more medication.
I like the way you worded your few lines about "to find my trousers down and a bunch of paramedics working back there!" - lol I have never known anything to happen in the gutter, always a first I guess...
There is a lot of information on this thread which is interesting regarding epilepsy. I only suffer from it because it is a nerve-related condition and a secondary condition to Generalised Dystonia, which took 18 months to diagnose.
Allen, believe me I have many stories regarding epilepsy, some are funny others not so funny. The problems you have if you are with no one you know, and have a seizure! Things can happen you won't believe and unless, people know how to put you in to the recovery position.
My wife actually carries around with her an A4 sheet of paper which is a full one page document, informing anyone that reads it all medications I am on and dosages per day, 4 sessions, 30+ tablets a day. Every 10 weeks Neurologists administer 6 injections of BoTox for Cervical Dystonia in my neck and shoulder areas.
Paramedics find it helpful, because it means she does not have to inform them everytime what disorders, medications, detailed reports of operations, including remission dates from cancer and 50cm of my intestine removed which was gangrene.
Paramedics are always happy to see and it is always kept upto date, including copies of Neurologists letters.
My wife keeps copies which are in the house, car and always on us if we go anywhere. Very rare these days though, more so over mobility issues and stomach problems.
Apart, from all that I am fine, well I could be better!
All the best..
Les.
mo-jas SteV3
Posted
as for trousers down in the gutter - that was just a horror 'what if?' vision your diazepam comment sent me off on - luckily i'm not tonic clonic so very unlikely i'd come across it (thankfully). ..what actually did happen one time i went down in the gutter was that i came round to find a nice policeman directing traffic around me and picking up all my scattered bits from the road, bless him.. and he never once touched my trousers!
..or another time when i'd just stepped away from a cashpoint. whoever it was that time didn't pick me up but they sure helped the cash in my hand to get up and hobble away.. as you say, good to have someone you know around but even with the odd bad experience, happily i've generally been overwhelmed by the kindness of strangers when i've been helpless.
interesting stuff you speak about regarding 'non' epilepsy - i've noticed several good threads on the subject.. seizures are such tricky li'l so-and-so's, ain't they?
final thought, allen - guess you've probably already done it to death but there is an impressive 'library' attached to this site - i was knocked out to find so much spot-on info in the one place.
ps.. sorry but i got confused when i spoke of winnie getting on ok with keppra but it wrecking my life.. my bete noir was tegretol ..how unfair to keppra! oh no.. that's right - they're ALL horrible ..lol.
anyway, fellow travellers - all the best ..one day at a time, huh?!
SteV3 mo-jas
Posted
When you been in hospitals as many times as I have the word "dignity" just goes out of the window, it makes life in the streets and showing your bum off nothing. lol
STORY No: 1. I was once naive, believe it or not and new to hospitals, and what was wrong with me was undiagnosed, hence I was placed in a private room waiting for a doctor. But the nurse that told me to get ready to see the doctor said just take off your clothes and lie on the examination bed. I thought fair enough, I cannot do anything wrong doing that, I was only around my early 20's. Anyway, about 30 minutes passed by and the doctor came in the room, of course I was expecting a male doctor, how wrong was I? LOL It was a short blonde haired young female doctor, and the first thing she said to me was "Mr. xxxxxx, I do not need to examine that between your legs!! LOL - Was I embarrassed and red-faced... anyway, she done many tests on me, before saying I will get our main Consultant Neurologist to see you in the morning, so I had to stay in hospital as well.
There are many, but I will give you a few I been involved in...
STORY No: 2. This happened in my local hospital. After having 2 major operations within 2 days of each other, I felt so much pain it was unreal. I was on an Epidural (yes, the pain relief women have for pregnancies, when giving birth!), Morphine and Oralmorph, and paracetamol. A slight cough and you had to hold a pillow on your chest to prevent moving your stomach, where I had the operation. I spent 3 weeks in hospital and 10 months to fully recover, not something I would wish on anyone. Anyway, during my time staying there I had my first bed bath, I was asked if I would like one, and after having drainage pipes and a urinary catheter, you feel dirty anyway. So I said "Yes, please", I assumed the standard nurses do the bed baths, but how wrong could I be!! Lying in bed waiting, mind you I couldn't move because of all the tubes and needles in my arms, I did try pulling myself up the bed but that failed.
Anyway, the next thing I see is 2 girls pull the curtains around me, saying they had come to give me a bed bath - I am one of these people that is inquisitive, so I asked them were they actual nurses, they both looked at me strangely and said no we are studying to be nurses - I said oh, you both seem quite young, they said well we are, we are studying nursing level 1 at the local collage and were only 16!! I thought OMG... there's me stuck on a bed, and 2 16 year old girls washing everywhere, and I mean everywhere, moving tubes as they moved down my body. Maybe, if I was younger I wouldn't of minded, but I was nearly 50 at the time! lol
One day the urinary catheter, was blocked and do you think I could get a nurse to check it, nope it was impossible, in the end I had to ask the sister to check and she said you need a new one fitted, and she went and got one, what a relief that was.
Having Testicular Cancer was a game and a half, 6 weeks my own doctor gave me anti-biotics. Then at one appointment I said to her, if this was an infection then it would have been on the mend within 5 days of taking the anti-biotics you put me on. So, I asked her considering the dull ache I had, which had not changed at all within the past 6 weeks was no better could she refer me to see a urologist, she gave me a slip to take to A&E and to be seen by a Urologist. Well, within an hour I was seen by a Urologist and an Oncologist, whom sent me down for a Ultrasound scan and blood tests. 2 days later I had a phonecall from the Oncologist saying I had Testicular Cancer, which I told my own doctor a month before, and I had even told my wife it wasn't an infection - I knew the difference because I have had infections before and they give a totally different pain. Well, I was in hospital for 2 days, had the operation and went home. I was in remission for cancer until March this year, before I got the all clear.
I know what I'm looking in most cases with my body, have had so many tests done over the years, some in London because they only had the equipment there and nowhere else in the country.
My doctor now asks me what I think is wrong with me, not the other way around. Most times I am correct and even see the correct scans being done. Just last Christmas I had all the symptoms of the start of Prostate Cancer, apart from one issue that was puzzling me. I told my doctor, she sent me for all tests to be done, but was unsure of the prostate ultrasound scan which was showing a benign testis tumor epidermoid testicular cyst, and because it is small it was not worth bothering with, I was happy.
Yes, my doctor is a female, used to be a male - but once you have both male and female doctors looking at any part of your body, you get used to it.
Having seizures in our hospital of the Outpatients Department must of been embarressing for my wife, because it has 8 departments and is all open-plan.
Having Epilepsy is a nuisance I agree, but where they happen can be very annoying not just to yourself, but if people around you. My worst one was in the passenger seat of our car, while my wife was driving. The car seat belts are not designed for Epileptic attacks - so imagine that happening when we were about one and half miles from home. I got lodged between the front and back seats, my daughter was holding my head so my wife told me.
Its been difficult, my wife tried as much as possible to hide my disorders from them when they were younger, she did a good job. All our children are grown up now, and they all help out with my problems, which are not easy.
Anyway, there's a few laugh's you can have on me! There is more, many people will have many stories regarding their health, I have many but I have a lot of adaptions on th property to try and lead a normalish life but it's still hard. I have an Electric Hospital Bed, a Clos-o-mat(Bidet/Toilet) and even an Electric Bath Seat lift - and even with all these additional extras life is still difficult. We still have review meetings wiith the District Nurses and Occupational Therapists.
Been typing this for a good few hours now, so I'll bring it to a close.
Allen, I wish you all the best, with which ever medications that eventually works for you. I will give you one note though, if you have the flu jab, be careful - it can cause problems with neurology matters.
Regards,
Les.
allen07303
Posted
each and every one of you are so kind iwith responses and well wishes.
i can see I will need to have patience through this journey....
allen07303
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i hope all is well with everyone...
in reading your notes about having your trousers pulled down it reminded me of something my girlfriend said when the medics were trying to put a neck brace on me....
i don't remember it at all but twice I tore it off and threw it across the way..
this really is like something I've never encountered ...
pone minute I was talking to my brother and the next thing I know I'm sitting in the back of an ambulance...
needless to say I'm very discouraged for a variety of reasons....
i fel like life as I've always known it is over....
does anyone ever feel that way?
mo-jas allen07303
Posted
mo-jas
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so yes, allen ..thing is - it kinda has ..i think each of us must have had to examine that one and sad to say you now find yourself doing the same.
that said, while life as you have known it may be over, life itself certainly ain't!! what we're really talking about here is change. must be hard for you not to be 'discouraged' - life has called on you out of the blue to make some unplanned changes of the worst sort; ones you wouldn't have chosen (oh, and it doesn't tell you how to work around them, either).
i'm sure 'discouraged' will make appearances but can you for the moment hang on to 'hopeful', at least till you get a clearer picture of how you stand and what you can usefully do about it? as you survey what must seem like wreckage around you, if you're looking for it there is so very much help, support and information to be had in amongst it. you never notice stuff till you need it but it's there all the same. you want to start putting the bricks back in a pile? there's help.
as for life changing.. well, apart from falling apart at the seams (complex and simple partials) every so often that's easy - plenty of other stuff too but for 'in your faceness' ..licenses; no cars, no bikes.. all went up in smoke the day they said 'it's official'! thing is, like all the other changes i've got used to it.
it doesn't have to be bad but we really can only make the best of what we have now. and life as it was.. if you're able, smile cos it happened rather than cry cos it's changed. take time to reflect but for now turn your face forward allen. :o)
allen07303 mo-jas
Posted
thanks for the kind words my friend...
like I said said earlier I'm 57 and was looking forward to retirement a year from now. (Civil service)
I've been at the same job for 31 years now with awesome benefits and all that good stuff but there was a 6 and a half year stretch I never took a day off for sick leave.....
ive built up enough that I could easily take off the entire next year and then some...
thing is my plan upon retiring was to supplement my income driving a tour bus around the western United States but my commercial drivers license is no longer valid for ten years after my last documented seizure....
ive definitely had a lot of Time on my hands to think things through and my biggest mistake was taking good health for granted.....
ive decided thre are no guarantees on what tomorrow brings....
please don't get the wrong idea because I'm not sitting around feeling sorry for myself because I do consider the fact that I'm actually very fortunate...
i not only have all my leave time available to me but several years ago I took out insurance policies on all my loans that if anything should happen that I'm unable to work the payments are made so I'm taking advantage of that as well....
i think it's just that one day here's the plan and the next day I'd better consider an alternate and it's nice to know that I'm not alone in this and there are others out here that are going through the same thing and to be able to talk about it and get it out there in a forum such as this is a good thing
karen26258 allen07303
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SteV3 karen26258
Posted
What rare genetic disorder do you have which contributes to your epilepsy? I assume you are under a Neurological Team, if you are in the UK.
Regards,
Les.
karen26258 SteV3
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karen26258 SteV3
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SteV3 karen26258
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I am so glad you were able to say what you have, which is rare - many people do not disclose a rare disorder, which is understanderable in many cases. I looked it up on the NHS website, it is certainly not a nice disorder (but then again, what is these days?). I try and keep up with disorders, because they interest me, and how people cope on a daily basis, I am no stranger to rare disorders.
When I was initially diagnosed by a Professor in Neurology and his team from New York, USA, I had to meet him in the Queens Hospital, Queens Square, London which is situated just around the corner from the Great Ormond Street Hospital for children - it took them nearly 2 years to diagnose that I had a form of Dystonia, and at the time I was only the seventh known case at the time.
It is still not a very well documented disorder even now, in England I am under the top British President of Neurology Dr. Geraint N Fuller. He is a well liked professional in his field of work, and been in newspaper headlines for curing a woman with MS.
A poem Dr. Geraint N Fuller wrote in April 2013, which captures many people with nerve related disorders is this:
I Come Armed With Words
Starting with the history, your story,
I help you find the words to capture
Unfamiliar feelings of disorder or disease.
A translation of sensation to explanation.
Words of kindness, thought and hope
Can give the desperate some rope
To hold above the bleak abyss
When future becomes but prognosis.
Warm words can wash away
The wailing of a weeping woman
When bitter pills and sharp scalpels
Treat the heart though not the spirit.
As but a mortal and physician
The tests and drugs I know are flawed.
And therefore to complete my mission,
I come armed with words.
Many of those words are so true, not just for my condition but many others as well.
These days what people used to class as "old wives tales" are not at all what they seem. Getting awareness across to people is difficult, when people ask me what is wrong, as in the main disorder they always think it is either MS or ME, none of which are even close. If I tell them the correct medical term then they are totally lost.
What got my attention with your rare condition was the fact Epilepsy is a side-effect of your main condition, which is exactly how mine started, but I was not born with it. I had an accident in my early 20's which disabled me for life, and I was told it would become worse the older I got, which was correct as well. But having Epilepsy and living with it on a daily basis is a nuisance because you cannot tell when a seizure is going to happen, if you did - you could plan around it - but our lives are not that simple, are they, and never will be!
I guess we could hope for a miracle drug to cure all ailments - which would be nice, but not in my lifetime.
There are quite a few rare disorders I have come across, one of which is my nieces daughter, who was born with Beckwith-Wiedemann Syndrome. This normally affects infants more than adults, but the danger period is "0" to "8" years old. My nieces daughter had cancer at just 6 months old, she had 3 major operations in her first year - she developed cancer in 3 areas, she is now 4 years old and in remission for another 3 years before she gets the all clear. Everyone loves her to bits, she is such a character.
Well, what a nice start to the day, a really depressingly dull looking one at that, jolly old England for you. I wonder if we will have the hottest Halloween on record and the 36 days of snow forecast, probably not, considering the forecasters never get anything right.
Anyway, Karen I wish you well (okay, as well as can be expected! lol) - that bugs me when I'm in hospital and you get visitors asking "How are you?", well I could go in to detail and bore them to death, or just say I'm fine, even though I feel bad - but then I would be lying! lol You cannot really win with that question.
Regards,
Les.
karen26258 SteV3
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mo-jas karen26258
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